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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Allyson

    Allyson *****

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    Thanks Justy for the interesting link.

    I note the wonderful and ever generous late Richvank had the foresight even then in 2010 to predict stem cell treatments may help, and I think he is right ;

    (I also note someone mentions gelatin to increase collage and I find that helpful- I mix a pkt of commercial jelly with a sachet of pure gelatine to decrease sugar and increase gelatin ration- gelatin in a capsule form was sold once as a treatment for strong nails and ? hair - ie collagen booster.)
  2. Allyson

    Allyson *****

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    Hi Sushi,

    I am not trying to convert anyone to have blind faith this theory.

    If it seems this way to you it is because it seems to me that some people have entrenched ideas ....such that they do not want to even consider any other possiblity. If you like, a block against this idea, which, without testing it out first before refuting it, is not a rational way to approach an issue.

    My point is this .. I spent many years thinking that my illness was caused by gluten intolerance or coeliac; so I studied up on all gluten-containing foods and avoided them. Then a specialist pointed out to me that I eat gluten only when I am out and think that makes me ill ... when in fact the real cause may be something else... the going out itself ... ie standing up for a long time, often slow walking such as in shopping centres etc.

    Extensive gut testing proved that I was NOT in fact gluten intolerant.....Lot of time wasted on that !

    (Testing involved eating all and only food supplied by a univeristy for 4 weeks with daliy breath tests and weakly stool tests sent overseas for microbial testing and examination, charting diet activity and wearing and actometer to record all activity etc etc . It DID show that I had IBS however.)

    Since this Doc has pointed this out to me ....my initial raction was disbelief - too simple, I was too ill, everyone on the forums discussed other POSSIBLE causes but not that,,,, so it could not be right. That phase lasted several months , Then I began looking at it and observing the correlation and found that it could in fact be right. A year later I am pretty sure it is accurate for me.

    A year is a long time to waste looking for a cause and a cure.

    you say

    An objective presentation of either research, experience, or personal theory--without trying to "convert" others--

    is bettter for you

    I am not trying to convert others

    If there are many subtypes under ME they have not yet been delineated as far as I am aware ( as they have for MS for example, which has at least 4 quite different types) and this may be one of them or it may be EDS or it may be that EDS and ( some types of ) ME are the same thing. Or it may be there ia a lot of misdiagnosis......

    I have presented my experience and observations as objectively as possible

    I am asking others to look with an OPEN MIND to see if it could apply to them too.

    Instead, some have replied, without looking at their symptoms or considering any possible correlation, saying that I must be wrong or misdiagnosed.

    I do not care if it does not apply to anyone else, and if everyone replied and said, "I have considered what you say, watched and thought about it for some time now and decided it cannot apply to me",,,then that is perfectly fine. (I may have another suptype or another disease entirely. )

    In fact the opposite occured , lots of people replied saying they had or their family had relevant symptoms or bendy joints etc etc, which gave me to think that there may be something in it worht invetigating further.

    Sorry, lost my train of thought so will post this so I don't lose it a reply again soon.

    Best,
    Ally
    MishMash likes this.
  3. Allyson

    Allyson *****

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    Thanks Meryl,
    that is very intersting; I love clear pics aht tdemonstrate clearly what would take ages to explain.
    merylg likes this.
  4. Allyson

    Allyson *****

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    Continuing on Sushi, what I want ot say is this..this theory is not mine but comes from highly placed and regarded orthodox medical sources.

    It is obviously relevant and extremely germane to our illness as it has been discussed here before - (thanks to Justy, Mish, Merylg and others who kindly sent threads)

    I am asking people please not to dismiss it out of hand as too simple or "done that" or "another illness" but to give it some consideration

    So I am sorry if you think it looks like I am wanting to force it on people, no.

    i am saying ,,, some have jumped in and rejected the idea peremptorily (and I think a tad aggressively) without any consideration - on the basis that you think ME is due to another cause ... viruses or what ever ... none of which have been proven and all which which I am willing to consider and have considered ... but preferably not in this thread - which is about this issue;

    Please give it some thought first,
    then if you see it really does not apply to you , fine, that is great , we have established that for some of us it may not apply and it may help us establish subsets of the illness or reclassify things
    But for many of us it does strongly apply

    and for some of us it does weakly apply - eg family members with relevant symptoms


    Gene testing may sort the wheat from the chaff. I will look into it asap
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  5. Allyson

    Allyson *****

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    Thanks so much for this Mish,

    brilliantly said.

    I would add that I feel strongly about this because blood supply and connective tissue are 2 major factors that affect the entire body in a miriad of ways and thus are the prime candidates to explain the complex and extensive range of our many and varied symptoms.

    We tend to be critical of medicos for not keeping an open mind about our illness....yet people here do not seem willing to consider or discuss this idea with open minds (by dismissing it out of hand) now that some highly qualifed doctors have presented this as a possible serious line of enquiry.

    Finally my close (hopefully objective) observation of my symptoms and their patterns of occurrence over the last many months has shown the idea to apply strongly to me, where no other theory has ever come close.

    i would like to see futher testing and research done to validify my experience for myself and others to whom it may also apply.
    The logical "treatments" seem to decrease the symptoms in me...eg things like avoiding heat, lying down after meals and after exercise and anytime the body is peripherally vasodilated etc.

    We have never found a cause for this illness

    until we find a cause we cannot find a cure

    Life is short and running out for some of us

    So let's look with an open mind at all available options, especially this one which is so credible - and is thought to be so by professors of medicine and blood pressure specialists... even if it has received little attention until now.
    MishMash likes this.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I didn't mean to imply this.

    I was responding the the words "proselytizing" and "converting" used in reference to discussing and considering this complex illness, as I do not think this approach makes for an effective exchange of ideas.

    Sorry if you misunderstood my intention. I certainly agree that this subject is "relevant and extremely germane", as you put it so well.

    Sushi
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  7. Allyson

    Allyson *****

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    The other point I would like to make is that this thoery is consistent with a lot of other ideas - as some have kindly pointed out .. eg with Dr Dr Cheney's low blood volume, Dr Myhill's paleo diet, and lot of other things, which makes it all the more credible and gives reasons for why they work.
    eg low clood volume could reallybe caused by over-dilated blood vessels; high portein diet is good for collagen procuction etc.
    Also almost every treatment that has worked for me is explained by this theory.

    eg things that boost blood volume or increase /improve circulation
    swimming pools, aqua aerobics, compression clothing, IM B12, clonazepam, pilates (abdo tone acts like a compression garment to abdo; plus you can do it lying down), electrolyte drinks

    as well as things that make it worse - heat intolerance - heat causes vasodilation so effectvely drops blood volume

    etc...tired...(or rather _?post prandial blood to brain decrease?)

    more soon I hope

    loving all the feedback thanks everyone.
    cheers,
    Ally
    MishMash likes this.
  8. Allyson

    Allyson *****

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    Hi Alex,

    DYSPRAXIAS

    not sure if it was you who posted about the dyspraxias

    Was a new word for me but I was interested to see a lot of my symptoms under it on the wiki link

    Not sure that all of them are associated with ME or EDS but I will mention them all to my neurologist next time I see him now I know they are official,

    I have always had a very poor sense of direction and have an uncle, his daughter and her daughter who all have it as well so I was pleased to see it listed as a dyspraxia and interested that it might be genetic.

    Likewise i am ambidextrous in that i can write with both hands at the same time...right hand writingnormally to the right , left hand writing the same words backwards - ie in mirror image- though admitedly left hand is shaky - maybe because it never had lessons like the right hand did.

    I developed clumsiness - initially on my LHS when I was in my early 20 s - the same side my varicose veins are incindentally an the left leg and hop muscles are allextreley stiff and tight - more so than the rest of my body.

    now i think I am ambidextrous in my clumsiness too, often spilling water and dropping plates - at least daily, often more thatn that.
    .
    I often miss my mouth when trying to drink

    I have yet to note if these symptoms are worse or only there when I am having bad days,,, I think so.

    My typing transpositions of 2 letters occur very often - I think have been amply displayed in my posts here - sorry everyone.

    i detested typing from my first lesson and skipped classes at school, same result when i tried as an adult to learn and downhill from there; I am a very good speller and have no dyslexia, so I guess it is a fine motor skills thing. I am always shocked when I re-read what I have typed. ( my next laptop will have white keyboard - I see better on them)

    my handwriting - which used to be very neat and legible - is now usually awful though it is erratic and I have some good days... still need to observe to see if they coincide with good ME days. that decline also started when I was in my early 20 s I think as a uni lecturer pulled me aside and told me off about it then.

    In writing and typing i feel my hands don t keep up with my brain,

    Thanks again for all the inrformative feedback,
    much appreciated,
    Ally
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  9. Sing

    Sing Senior Member

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    I am developing many of these problems. Since my OI greatly worsened after major surgery three and a half years ago, I have more of the dyspraxias and more of what I see as connective tissue problems as well as arthritis. I am in my 60's. Larger blood vessels have spontaneously broken in my hands and feet from time to time. I also have varicosities, but these are different from the larger vessel breakages inside which cause bulging bruises. My ligaments are no longer up to the job of normal activities, but seem to tear and become injured easily. Am collapsing and uncoordinating, dropping the ball, falling down on the job--so to speak. My life has to be increasingly limited in terms of physical activities. My experience belongs in this conversation, or thread, but I am sometimes frustrated by how we can go around in circles trying to figure out cause and effect, and to apply definitions as they are currently known.

    These disease symptoms or disorders are still being studied and defined, and are not fully understood. Then some propose that one of these diagnoses causes another. Others may propose the opposite sequence of cause and effect. Maybe the information about the disorder comes from a study of children and an apparent link to a genetic configuration. This is taken as the primary problem, with other symptoms which arise later as secondary.

    All I am saying is that there is a weakness in accepting these definitions so literally, then trying to string them in a logical sequence of cause and effect. Because my understanding and experience of what I have, most of us seem to have, is a big systemic picture which develops more features over a lifetime, especially with aging. My guess is that ME, or ME/CFS, may not initially have the features of an autoimmune illness, including connective tissue problems, but it develops them in time. The Norwegian Oncologists who accidentally discovered the value of Rituximab are hypothesizing this. I don't know what the answers are in terms of the very best hypotheses for good future research. But there seem to be plenty of clues if any researchers are picking up on our patient experiences. (I wonder if any read Phoenix Rising?)

    What I need to know more of as a patient, however, is what to look for in terms of symptom patterns, new symptoms, and what types of specialists and testing to seek out. And are there any effective treatments? I am both looking at this and experiencing it primarily as a patient rather than a scientist or doctor, which I have no knowledge for. We often help each other either directly or with clues as we try to find our way through the wilderness, so I struggle through all the back and forth, looking for these ideas. And maybe some good ideas for future research too are being offered here, but I can't evaluate or contribute to those very well.
    MishMash, ahimsa, justy and 1 other person like this.
  10. Allyson

    Allyson *****

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    Hi Sing ,

    thanks for the interesting reply.

    As far as orthodox mecidal tratments here s what my doc said actually now mixed in with my own suggstions sorry
    drugs were florinef - didn't work for me
    then midrodine - you do 48 hour halter nonitor test firs tand my BP was just too hight ot have it; it is a vasoconstictor
    then I tried licorice root caps 2 per day and these do seem to help

    exercise boosts blood volume if you can do it
    avoid walking - that is the worst thing to do
    high salt diet and salt drinks ( we add potassium )
    avoid standing when hot
    wear light comprssion clothing esp round abdomen - ie does not need to squeeze too tight

    avoid getting hot
    avoid heat to abdo - eg laptop computers on your tummy - not good at all dilates large abdominal blood vessels
    don t go thirsty
    avoid queues and supermarkets ... lots of slow walking

    imho - lie down whenever possible - this seem to help me and I only stand up when I need to
    andkeep your feet up if you have to sit up

    looking at stem cell tranplants and genetic typihg as the way forward

    they don t know why SCT help but they help some and first ME patient to have them in Australia is positng aboutt in on the Not Crazy forums ; she is one month down the track and we are watching keenly ...it is experimental still

    As far a symtoms I am suggesting watching yourself to see if doing the above and observing if standing or sitting upright ( rather thatn activity) up causes you to crash the next day, and if lying down for several days cures you temporarliy - ie gives you a good day or two or more good days.

    best of luck and thanks again for the reply
    MishMash and Sing like this.
  11. Allyson

    Allyson *****

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    Hi again Sing ,

    basically the observing upright thing is like pacing model,, but instead of watching how much you do you observe how often you are up, try to maximise horizontal time to save it up - as it were - for when you need it.

    so if you need to write an sms - that does not take a lot of energy - but lie down to do it rather than standing and see if doing this for all those little things - and especially avoiding stnding or sitting upr when you are hot or vasodilated - adds up to more well time (aka more energy perhaps)

    cheers,
    Ally
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  12. Allyson

    Allyson *****

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    Sing another thing I would advise doing is to start an ME diary and chart all symptos and everythi really on a daily or hour by hour basis so we can tally cause and effect.

    There is some wher where you can "start an ME diary online" ( i think i saw in on me/cfs forum about 6 months ago but I have not got the link to hand)

    I think this would be a very useful thing to do and especially if one notes how much time they spend upright versus horizontal each day and how they feel the next day.
    MishMash and Sing like this.
  13. justy

    justy Senior Member

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    Hi Ally - for the sake of clarity i have a question. in one of your posts above you discuss your doctors 'theory' Do you mean that his theory is that YOU have a CTD and has now diagnosed you as having EDS, or that he believes that CFS is, or is caused by a CTD, in your case EDS. I am a little confused on this point.

    For me, having been ill for so mnay years and living in the UK with no access to testing i am still trying to slowly rule out other diseases, i also follow the work of the top researchers - Montoya, Peterson, Myhill, Mella and Fluge, Klimas, KDM etc. I see that they are helping people with Gut protocols, antivirals, and immune modulators. I see these treatments helping many to have better functioning, or in some cases remissions. This is the route i would like to follow

    1. Ruling out other diseases - autoimmune (lupus etc) CTD's and others.
    2. Testing for bacterial/fungal/viral/parasitic infections
    3. Treating any found with antibiotics, anitvirals, herbs and diet
    4.Getting back on track with gut - diet, herbs, etc.
    5. Immune modulators (herbal or drug)
    this seems to be the plans that are working for others.

    After 17 years of being ill - the last 4 housebound and unable to work, using a wheelchair for longer trips with family - i just want to improve my health as much as possible - for me doing symptom diaries etc feels like a step back - i also need to get on with the life i have - even if i do feel ill all the time and have limited energy, i have built a life for myself that most days feels worthwhile.

    All the best in your search for answers,
    Justy .
  14. MishMash

    MishMash *****

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    I don't believe you are taking a very nuanced approach to the word "proselytizing."

    Every person on this site is proselytizing, if he is giving an etiology. Because --still-- nobody has terra firma to stand on. It is all nebulous, anecdotal and informal. There are no proven facts. When members continue to post theories, I think it is stimulating and welcome to the debate. Particularly, if a member has posted an scientific article, or cited research, it has every reason to be looked at seriously.

    I'm afraid you're wrong about proselytizing as a scientific method. Gallileo definitely proselytized about his theory of planetary orbit. He kept speaking and debating the theory. He only shut up when the Pope forced him to recant. Everybody thought he was wrong at first. Tesla proselytized about the virtues of AC versus DC current (in a bitter war of ideas with Thomas Edison). Both spoke widely and gave demonstrations of their examples of electro-magnetic conduction. Science is not simply a "objective presentation of ideas." If you associate "proselytizers" with people at an airport, beating on tambourines with shaved heads, chanting "hare krishna" then that is a very limited interpretation.
    Allyson likes this.
  15. Allyson

    Allyson *****

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    Hi Justy,
    healh wise it sounds like we are pretty similar; but I have been ill for about 28 years now, pushing and crashin gmost that time but less able to push now. i dont use a wheelchair but dont get out much; I would like a reclining wheelchair as I fell I could go out more often with one of those if I could put i in the car , drive somewhere and then use that when I am out to lie down... However one that could do that would cost the price of a small car - 10 to 20,000 dollars, so I usually stay home unlesss I am feeling well or really have to go out.
    The professor i see specializes in blood pressure and seems extremely wlel inofrmed aobut OI and how it works; he gave and excellent paper on it a t a recen ME conference here in Victoria Australia. H e professoe not to have researched ME a lot .. but he is very smart and also vey modest so may be understating things. He is aleo very open and receptive, so not one to wave things aside. eg when I researched mito diseases as they matched many of my symptoms he gave that carefull consideration ( and has not realy ruled it aout as a possibility; but he did say that it is extremely rare.) the thing for me is I think miots would not be affected by the heat and I am very mush so so I see that as an indicator that it is more CTD due to hte heat affecting vasodilation . He sees hundeds of patients with this or similar conditions, POTS etc. From what he has said to me he is of the opinion that ME is the same thing as EDS. And he went to a recent EDS conference where the specialists in that gave lists of symptoms for EDS that matched our own in bulk variety and complexity. for esample under the heding GuT symtoms he had written the word " everything" THEy seem to be of the opinion that EDS is very prevalent and we are seeing just the tip of the iceberg, and that alot of people mask theri symptoms with caffeine especially but also alcohol etc.

    I was quite annoyed when he first said he thought they were the same thing - I suppose having fought for years to find a diagnosis you get attached to the one that finally seems to hit the mark. really it does not matter what the name is as long as it its taken seriously and researched. ( which cfs is not... so I prefer ME to cfs).

    I add that he say s inadditon gto the stretchy veins - and all the myriad problems that causes - you get a host of other things which include ALLERGIES HAY FEVER asthma excema, varicose veins hemorroids, positive gorlins sign, migraines and a few more I think. I have only allergies asthema and vv and I did get migraines in the past though many in my family have the other signs - they need to be in a first degree relative to count. - mother sister father brother child.


    As to my OI I only have mild occcasionsl dissiness usualy on standing as a synmptom, but then the trouble with thsi condition is we mask the OI by th eadrenaline release which covers up the symptoms but causes other problems. My pulse do go up in the supermarket on halter monitor testing though. And one aout of about six measure of lying standing B)P they cought a 19 point sytolic drop form 125 to 106 - 20 is diagnostic - but it hadd correctied itsefl to normal by the next standing reading 2 minutes later.

    I do not keep a diary either and I see why you don t want too. I am so sick of ogoing to doctors. etc. But i think it would be good idea to keep one provided one keeps a record of upright time versus horizontal in it... or even if that is all one recorede and crashes I think that would be useful way to get data that confirms the theory.

    Hope this is of help.

    i HAVE found that avoiding any thing that heats the body means I feel better more of the time.... and I am shocked at how much heat the laptop on the abdo gives out - i change the pillow under it a least hourly and it is heated right through by then. The large veins in the abdomen are the ones that will give most trouble if distended i think. due to the amount of blood they can hold....and hence withhold.
    Also time spent sitting upright at a computer - I suggest lying down for anything you can and see if that makes a difference.
    Things like this have mad e adifferencte to me in giving me more well time and fewer crashes so I am asking others to try then an dobserve them and see if being upright COULD be causing worse symptoms.

    Cheers, and thanks so much for all you interest and helpful input
    Ally
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  16. Allyson

    Allyson *****

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    Just a tip if you have not done any diet stuff, as most of us have IBS and fructose malabsorption . - the low FODmap diet has been well researched to help those conditions ... google Sue Shepherd here in Melbourne who did the original research and has written some very good books on it.

    here is one link
    http://shepherdworks.com.au/disease-information/low-fodmap-diet

    Also Low GI diet helps (google univsersity of sydney glycaemic index to easily look up list of all foods tested)
    http://www.glycemicindex.com/

    and for me high protein helps. (Both low GI and high protein are what skin researchers advvocater for collagen replacement too interestingly.)


    I am also lactose intolerant - easily tested at home with a simple lactose challenge - and i find that gives me a lot of gut problems so if I cannot avoid it I take lactase capsues with iany lactose and that usually prevents the bloating from lactose.

    So far I have not tried many antibiotics and they do not really seem to help anyone long term form what I gather in my brief readings of it.

    ( I do wonder if peole say they fell better for a while when they took antivirals.... were they ill with a virus like pneumonia then and hence lying down more)

    So far I have tried dexamphetamine - did not like it at all , just like drinking strong coffee the i crash the next day
    florinef - mayd me feel unwell and did not help
    licorice root - that does seem to help a bit
    i was unsutable fo rmidrodine but if i can get my BP down I wil try that..

    i am likeing autologous stem cell transplants - they do them as a day procedure from your own abdominal fat -
    and genetic testing as potential ways forward
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  17. Allyson

    Allyson *****

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    Yes well said Mish Mash, I quite agree. We are all groping an elephant in the dark alas, and if someone says they think they have found the tail then no one else has the right to say they are wrong until the lights go on. But think of Gallileo too- who was "pardoned " by the church just a few years ago ( ie 200 odd years later) for claiming the earth was round when every one "knew" it was flat. Which I think just means we should not shoot down ideas before giving them due consideration.

    (The Earth is Flat Society still has 200 member worldwide by the way.)
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  18. Allyson

    Allyson *****

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    I am the same Alex, - abnormally still and I wonder if it is due to some increased muscle tone due to some other problem....however it did not exlclude me from and EDS diagnosis as that s a different thing to hyperflexible joints - which i don thave either btw.
    I reiterate that the wikki page in EDS is woefully inadequte and needs updating

    Cheersand thanks forhte intersting feedback,
    Ally
  19. Allyson

    Allyson *****

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    I erroneosly called it rice paper scarring in my quote.. i see it is cigarette paper scarring in the links you sent meryl thanks. I have 2 such scars.

    Incidentally I recalled another relevant incident to this discussion.

    I enrolled in some art classes and went for few weeks but I was always ill the next day after each seesion; we were using oil paints, linseed oil and turpentine so I assumed I had a sensititvy to them and stopped going.

    In retropect now - it may well have been the fact that I did a 30 minute drive there and 30 minutes back and stood at an easel for an hour and half that actually made me ill. In those days I was not even drinking electroytes to boost my blood volume so i think that is highly likely.
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  20. Allyson

    Allyson *****

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    I also have easy bruising and have had that for many years... it seem less now that I take all my1000 supps.

    Another similar procedure to stem cell transplant is Platelet Rich Plasma infusions - potentially it would be great for us as it re-builds collagen

    Has anyone heard anything about them for ME/EDS?

    I see stem cell transplants are being used for cosmetic facial and general rejuvenation as well as treatment for baldness and other things apparently (I think this is good as it feeds data into research for us) as well as Parkys, MS and several other diseases including cancer and leukemia.

    It is now done as a day procedure; they suck fat from your abdomen with liposuction, filter out the stem cells (which are abundant in your abdo fat) and then infuse them back into your veins via a central line.

    here is one link; there are many other sites now on the web

    http://stemcellofamerica.com/?gclid=CO6-rob6sbQCFQhZpQodJCwApg

    http://www.webmd.com/cancer/autologous-stem-cell-transplant

    Someone with ME on the Not Crazy site has had autologous stemm cell transplant done in Sydney recently and is reporting about it on Not Crazy.


    I
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